Category Archives: Crohn

Mike never met Boo

Yes, it has only been 48 hours since my bright idea to emulate Mike and Carol Brady. Funny it didn’t take a half-a-year for me to begin failing. I know, you want to pat me on the head and say give myself a break.

But truthfully I sometimes wonder where the brakes are.

Boo has been out of her school program for just over a week. I thought going away would be a great idea. We went camping and instead of camping we dodged rain storms. Being away set off her bowel issues.

Which I was prepared for, seriously, I have enough meds to rectify either option: Hazmat or Obstruction. What wasn’t I prepared for was Boo’s regression to happen so quickly. Only two days home from vacation and she is no longer feeding herself, not going to bed without screaming for over an hour (whomever said that children cry themselves to sleep after 10 minutes never met Boo) and having frustration issues.

I just do not know how to calm my child. First she wants her shoes off. Okay, I can do that. Then she screams, bangs her head and throws herself to the floor because they are off. I swear she made her head spin. Maybe it was mine.

www.goldderby.com 

I caved and put them back on. Nope, she wanted them off. Then on. Then I want a cookie (her, I wanted a glass of pinot grigio–there was still some left in the box). I decide to put on therapist/mom hat and employ the ABA therapies. She wants the shoes off they stay off. She can’t decide between Oreos and goldfish? She gets her first choice even if she runs away asking for a donut.

I’m done at this point. Mike is nowhere to be found. Carol, well I don’t have her hair or patience. So I put on therapy hat…we will by all that is Holy employ ABA. If she wants her shoes on, then they stay on no matter how she screams. She wants cookies? Then she gets her first choice, even after she walks away screaming.

The icing on the cake? Allie comes up to me and says:

Is it times like this you wish Boo wasn’t Boo?

And I break, again. I channel Carol and explain, it’s not Boo that is the problem. It is that Mommy doesn’t know how why Boo is screaming. Why Boo can’t decide between shoes on or off.

Mommy just doesn’t get it sometimes.

That Allie or Mom or Dad can’t “fix” this, we just have to try anything that may work. That I have to put up with behavior I would never allow Allie to get away with. That Allie sees that Boo gets treated differently by her parents. That we have two children that we have to treat differently.

That is not Boo’s fault or really mine. But that whole Catholic guilt thing…with an added dose that as a mom we are not doing quite enough makes me wonder.

Why

Why don’t I have the answers. A mom is supposed to, right?

Why does Boo get so frustrated?

Why can’t she use her words?

Why am I so whiny. For Cripes sake my child has words, and can walk and can show her frustration. There are so many parents out there with less.

Why, oh why must I be down?

Why the freak can’t she realize she is supposed to sleep alone. Yes, she slept in my arms for a weekend camping. But that’s over now. Why does it take five nights to undo two?

Why if I have to be Carol is there not an Alice? I mean, seriously people do you think Mike and Carol would have been so calm without their Alice.

Just think how much easier life would be with Alice.

There would be pork chops and applesauce. That I wouldn’t have to cook or force Allie to eat.

Alice knew that the one thing not to stomach was a perfect kid. Although I wouldn’t mind that perfect kid for an hour or two.

Alice knew that a five letter word for exhaustion was ALICE. Another good choice would be MOMMY

Alice, when asked an unanswerable question would reply if the right answer meant a trip to Europe. I wonder if the girls would have to go?

Anyway, I kind of got off point (are you still out there), is I wonder if this gets easier. I thought Boo’s first days in the NICU were bad. Then I thought, when she threw up everything I put into her, that this was the hard time. Then and then and then….there are a gazillion times I thought life would be getting easier.

Then there was summer break.

And sleepless nights.

Wondering if I am every going to get being Boo’s mom right.

And so thankful, from the bottom of my soles, that Boo is back in school on Monday.

There better not be snow.
 



I did it!

After two weeks of “training” I did it. I managed to run a 5k and not be the last one across the finish line. My husband ran it with me. He did not train at all. Which makes me extremely jealous, as he never got out of breath.

The race started with motivation from the 19 year-old who organized the race to raise money for Crohn’s Disease. Mackenzie is a cool kid who has battled Crohn’s for the past three years. When she had to postpone starting college due to the disease instead of sitting back and feeling sorry for herself, she organized a 5k.

She is an inspiration for all children not to let illness, disease or hardship to defeat them. As she finished her speech she informed us that this was an “easy” 5k with just one hill. Oh, but it was a killer hill with a cemetery at the top if anyone couldn’t make it!



With those words of wisdom we were off! I started off with the pack, that quickly left me behind. David (thankfully) believes in leaving no man behind so he slowed to my pace. My goal? Keep the 80 year-olds behind me and not come in last.

That hill? It was after the first half-mile. As I am struggling to breathe running up the hill, David says: I know a short-cut. NO! I am not cheating, I am running this damn hill. Boo, in the stroller, is yelling RUN. Now in his defense he did offer to take over pushing her. But I was making a point and have way too much pride to give up.

Although I did slow to a walk. As we crested the hill, David encourages me to start running, after all it’s now down hill and we might be able to pass a couple of teenagers. We round the corner, Boo yelling ‘fast’ and me trying to breathe.

But we did it, we ran a 5k in under 38 minutes (okay, very close to 38, but it was under!).  There is rumor of a runner’s high. When the adrenaline starts to flow and all is peace and harmony.

I never found it.

This is what went through my mind as I ran (thought because I didn’t possess the energy to speak):

Boo really has to stop eating donuts and cookies
David knows way too many people in this town
What time does the Irish Pub open
The next time David jumps onto a staircase and shows off I hope he breaks his ankle
Crap, did I take a wrong turn
Boo screaming “I’m running” really isn’t helping
Does that girl in front of me know her ass is hanging out of her shorts
Why didn’t I know about the dress code for this race
Who can run in all that make-up
Boo please stop yelling FAST I’m doing the best I can
Where the hell is that runner’s high
How can David NOT be out of breath yet
Am I supposed to be listening to his stories
If I finish this I am so getting a burger and a glass of wine

HOLY CRAP There is the finish line!

Phew I’m not the last one across and I didn’t eat one bug